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health at diagnosis

Posted by ann0616 @ann0616, Mar 14, 2019

I’m curious if anyone in the group was diagnosed with bronchiectasis and had no problems at diagnosis. I have asthma, acid reflux and had a bad case of pneumonia two years ago. I also had whooping cough ten years ago. Other than that I dread getting colds because I cough forever, but nothing other than that. I had cultures taken at diagnosis and they all came back negative. I had breathing function tests which all came back pretty good for someone with asthma. The only reason bronchiectasis was caught was because I had a CT scan for a spot they saw on my lung. I went to pulmonary and they want to do another CT at six months and if there is no change it will be once a year. Is this just a ticking time bomb for me? I feel like I am waiting for something to happen and sometimes even wonder if I was diagnosed incorrectly. I read the boards and don’t see anyone here that had this disease start like mine. I see your struggles and take it all in for what might come down the road. Thanks for your thoughts.

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sounder27 | @sounder27 | Mar 17, 2019

Hi Ann, I too have everything you mentioned as well as atrial fibrillation and sleep apnea. I sleep on a wedge for the acid reflux and cannot get used to a cpap. My pulmonary doc has prescribed a vest that is used mostly by cystic fibrosis patients. Tho I have yet to be fitted for it, I understand that it acts like the aerobika on a larger scale and helps to clear the mucus. I have a lot of mucus and have trouble clearing it. I am not able to take the usual antibiotic cocktail that many are prescribed due to interaction with my many heart meds. And I am not able to have an ablation to control my afib due to the amount of mucus and the length of time I would need to be intubated. It all seems like a catch 22 to me. All I can do at this point is try to follow the anti acid diet, sleep on the wedge, drink lots of water, not eat after 4 in the afternoon and use the aerobika and shakey vest. I have reduced my work hours to part time and I am still exhausted. It has helped me to hear what others who have this diagnosis are doing to cope and what their docs are telling them about it.

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ann0616 | @ann0616 | Mar 19, 2019
In reply to @windwalker "@ann0616 Ann, I think the majority of us in this group has MAC/Bronchiectasis brought on by..." + (show)
Profile picture for Terri Martin, Volunteer Mentor @windwalker

@ann0616 Ann, I think the majority of us in this group has MAC/Bronchiectasis brought on by acid refux/gerd. It is a common cause of bronchiectasis. Just follow the guidelines for dealing with the reflux. One thing that really helps me to avoid reflux is eating smaller amounts of food at a sitting. It is better to eat five small meals a day, or add in a heavy snack to suppliment a smaller quantity at dinner and lunch. Have you tried this already?

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@windwalker Terri, I take medication for reflux and do watch what I eat. My reflux is very manageable with the med but I do watch what I eat and do not eat heavy meals.

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